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www.SAILDatabank.com

National data - Global reach

Cynthia McNerney

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Head of Data Acquisition and Provisioning

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What is SAIL Databank?�

‘Containing billions of person-based records, from the last quarter of a century or more, SAIL Databank is a rich and trusted population data resource based within Swansea University Medical School. SAIL Databank is accredited to the highest international standards and exists to improve lives by providing researchers with secure, linkable and anonymised data that can be accessed and analysed from anywhere in the world.’

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Public data

Public good

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SAIL Databank: A Summary

  • Built from the ground up as a safe, legal, social acceptable solution to data linkage and data sharing
  • Underpinned by world-leading technical infrastructure (SeRP)
  • “No data leaves” model, keeping data under control at all times
  • Highly automated, highly efficient, highly secure, completely trustworthy
  • Creating unsurpassed research-ready linked data resources for analysis
  • Not limited to Welsh data – supports UK and international projects

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Core Principles

1. A safe and trusted databank which harnesses population-scaled data that enables important questions to be answered that could not otherwise be addressed without prohibitive effort.

2. The richness of our data serves to enhance research and to support better policy-making and practice that improves people’s lives.

3. As part of Swansea University’s Population Data Science, we work collaboratively with all types of organisations that use population data for research evidence to inform decision-making.

4. We provide researchers with linkable, anonymised data ready for analysis that can be accessed remotely anywhere in the world via the SAIL Databank.

5. We’re committed to include public involvement and engagement in research studies and at all levels of SAIL Databank management.

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Health Data

    • >80% Primary Care (GP) and 100% Secondary Care (hospital) Health Data.
    • Covid data – test & trace, vaccination, symptom tracker
    • Disease specific – cystic fibrosis, cancer registry
    • Ambulance Service, Emergency Department

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What does SAIL contain?

Administrative Data

    • Schools and Education
    • Employment and housing
    • Justice system and children in care

* SAIL Databank never contains identifiable data

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SAIL Datasets

https://saildatabank.com/saildata/sail-datasets/

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Research Question Examples

  • Is disease x increasing or decreasing?
  • What are the long term outcomes of the Welsh Government’s anti-smoking policy?
  • Might early childhood medication later affect how well they do in school?
  • If care is redesigned in a particular way, what will be the likely impact on GP services and hospital services, and on different populations – for example different age groups?
  • How much does poverty affect the need and demand for health services?

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How is SAIL Used?

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Impact of SAIL Databank - Publications

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Impact of SAIL Databank – Policy Reports

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How can researchers access the data?

Scoping

    • Feasibility
    • Refine Idea
    • Determine Cost of SAIL Support

Information Governance Review

    • Internal review by senior members of SAIL team
    • Independent Panel review (at least five members, always includes a lay member)
    • Data owner/other approvals (where applicable)

Data Loading

and Preparation

    • Anonymisation and loading of project datasets (if any)
    • Creation of data extract
    • Researcher verification including Safe Researcher Training

Project Active

    • Project team gets access
    • Conduct Analysis
    • Export Results, using data out request process
    • Projects subject to occasional audit to ensure they are adhering to terms of IGRP agreement

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Making contact to initiate project scoping

https://saildatabank.com/contact/

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Information Governance Review

  • All applications to use data in SAIL are required to be reviewed by the IGRP
  • Some data holdings additionally need the specific assent of the relevant data owners
  • IGRP fully independent committee
    • Approx 1/3 data owner reps, 1/3 scientists and ethicists, 1/3 members of the public
  • Applications to IGRP need clear details of project, methods, outputs and risk mitigations
  • SAIL only allows outputs to be removed from its system if they conform to project approvals
  • Two stage review process – SAIL review with feedback prior to IGRP review

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Review Process

  • Chair will appoint a minimum of 5 members to act as nominated reviewers for each application

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  • Nominated reviewers must record initial response within 28 days

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  • Panel to reach final decision on project within a maximum of 42 days of the proposal being sent to them
  • Reviewers to provide one of the following final responses:
    • Approved
    • Minor revisions required
    • Major revisions required
    • Rejected

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Where revisions are requested the applicant to revise and re-submit the application

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SAIL Gateway Access

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  • User request to be accompanied by
    • signed Data Access Agreement
    • CV
    • Evidence of Safe Researcher Training

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  • Account created and user credentials and

yubikey issued to applicant

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  • Access to remote desktop platform with array of toolsets and applications

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Questions

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For more information about SAIL Databank see:

www.SAILDatabank.com

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